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Inside Epilepsy: Programs offer support, learning for those living with epilepsy

At first, Sarah Bégin’s seizures would only happen while she was asleep, safe in her bed and with her partner by her side.

Then her seizures began occurring during the day and she knew this would change her life.

“I was scared and confused. I had never experienced anything like that before so I didn’t really know what to do. I didn’t know what was going to happen after that,” said Bégin.

As a musician, Bégin thought that having epilepsy would impact her performance as she was about to head out on a tour to play in Montreal.

Jorge Gavida, Bégin’s partner, recalls the night that he witnessed Bégin have her first seizure.

“It was just a difficult process. Having to wake up your partner and try to get them to calm down and explain that there are paramedics in the house in the middle of the night,” said Gavida.

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Bégin didn’t always feel comfortable asking her doctor personal questions about how epilepsy would affect certain aspects of her lifestyle such as pregnancy. She turned to support organizations such as Epilepsy Toronto to find those answers.

“They’re very good at answering the kinds of questions that you might feel embarrassed or shy about,” said Begin.

Support services for patients with epilepsy

Epilepsy Toronto is an organization that offers counselling, facilitates support groups, provides public awareness and education. People with epilepsy can share their experiences and relate to one another to help cope with the condition so that they don’t have to feel alone.

“A lot of people feel a sense of isolation,” said Rosie Smith, the director of adult services at Epilepsy Toronto. “A lot of the times they come back and say, ‘Wow. That’s my story. There’s my story. Somebody else gets it. Somebody else understands.”

As a community agency, the not-for-profit group sees the concerns patients with seizures deal with first-hand. For example, Smith said a big concern for adults is a loss of independence. Since seizures can occur at any time, adults feel as though they need to have someone take care of them.

“You may have someone who is still able to continue to work and have a family and live fairly normally while taking their medication. While there’s somebody else who may have four to five seizures a day,” said Smith.
Some people even quit their jobs because the seizures can impede job performance.

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Bégin was one of those people. She also worked in a kitchen and felt it was a hazard, knowing that she could experience another seizure at any moment.

But it isn’t just adults living with epilepsy. Children are often affected by it as well.

Children coping with epilepsy at early age

Sick Kids Hospital provides support services for kids and their families. There is a program called Epilepsy Classroom for children who have multiple, intense seizures as well as those who have recently undergone surgery. The classroom provides individual learning and social-emotional needs for epileptic children.

The Epilepsy Support Centre in London, Ont. is another organization that provides support for people living with epilepsy. There are programs for adults and children that have support groups and activities. A program called the Gift of Respect Store brings youth and adults with epilepsy into the workforce to improve their chances of getting and keeping a job.

Smith says, “You see people fall down and you see them get up again. You see them fight everyday to let people understand that look I’m a normal human being and I have value and I need to be understood.”

For people like Bégin, a community service like Epilepsy Toronto is valuable to her when it comes to dealing with the emotion and trying to understand how to continue on with life despite her condition.

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“They offer a really good support structure. I know that anytime I can walk in there and there will be somebody who can put me at ease and help me out,” said Bégin.

Special:Focus Ontario – Inside Epilepsy

Part I: Inside Epilepsy

Part II:Inside Epilepsy: Patients turn to brain surgery for treatment

Part III:Inside Epilepsy: Toronto woman’s crusade to shed light on treatment options

Part IV:Inside Epilepsy: Program offers support, learning for those living with epilepsy

Part V: Inside Epilepsy: Answering a call to action